Published on: August 31, 2018

Dear Friends,

In August, the state of Kerala in India saw unprecedented floods, destroying numerous human lives and dislocating over one million people.

People who already have serious health related suffering, and who now developed health issues, are particularly vulnerable in this situation. So are those with disabilities, and children and the elderly. Many were rescued, but without their essential medicines, and with no access to them. Some lost their health documents. There is also the possibility of communicable diseases that may ravage our people in the coming weeks. The task of long-term rehabilitation of patients who need palliative care is tremendous. Pallium India is making special efforts to reach out to them, as much as we can.

We can achieve this only by working closely with the government machinery, which, we are proud to say, has been doing an excellent job. We also shall work closely with the civil society (again, a matter of pride to us, the people of Kerala have been simply magnificent in reaching out to those to need help).

We need manpower – nurses, doctors, social workers and volunteers, particularly with training in palliative care. And we need money.

Please read how you can help: Let us not leave them adrift

Thank you, everyone who has chipped in to help. And thank you, Mr Unnikrishnan from Save the Children, who are helping us by sharing their experience and helping us with advice and technical knowhow.

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A month of losses

Dr. M. R. Rajagopal, Chairman of Pallium India, writes:

What a month for losses!

First, the shock of the worst floods in a century in Kerala with about 1 million people in relief camps. And then came the news of the death of two people, who had for many years enriched my life as well as that of numerous people in palliative care.

One was Subair – Subair who came to us as a patient some 23 years back with a broken life and a story of stepwise amputations of his lower limb due to cancer; the financial destruction which sent his children to an orphanage; agonising pain which could be controlled on fairly high doses of morphine; rehab with a coffee vending machine which gave him back his life and livelihood, reuniting the whole family. A tower of strength, he inspired other patients and families and all he came across.

This man demonstrated with his life, how to overcome adversities. When he found that his experience with pain management and with morphine could be a learning point for others, he always went out of his way to tell his story to those who needed that learning, including doctors and medical students. Much has been written about him; he was also filmed by Moonshine Agencies in Australia and by others. He finally succumbed to his ailments on 25th August, 2018.

Soon afterwards, we heard about the sudden demise of another of our fellow-travellers, Rahna from Nilambur.

She too had been our friend for about 20 years. She had pain from a cruel disease called chronic calcific pancreatitis.

(Image: Rahna [in green] with her mother Sainaba)

Rahna taught us forbearance and her whole family taught us lessons in integrity.

Both Subair and Rahna not only consented to having their photographs made public, but also had asked us to make their stories known if they will benefit others.

Thank you, Subair and Rahna. Rest in peace!

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Union Health Ministry amends draconian MCI guidelines

In a major victory for candidates with disabilities aspiring to become doctors, the Union Health Ministry amended the controversial Medical Council of India’s (MCI) guidelines debarring admissions to people with specific disabilities. 75 doctors with disabilities from across the country had submitted representation to frame new guidelines.

Read News in DNA: https://www.dnaindia.com/mumbai/report-medical-council-of-india-s-guidelines-for-pupils-with-disabilities-amended-by-union-health-ministry-2653437

Dr Satendra Singh, who lead this advocacy group had also filed writ petition in the Supreme Court appealing to quash these guidelines. The ministry in its response to the SC query accepted the MCI guidelines with several amendments benefiting candidates with disabilities. The ministry rejected the MCI recommendation that learning disability is not quantifiable. Upholding the assessment guidelines notified earlier by the Ministry of Social Justice, the Health Ministry allowed people with learning disabilities (dyslexia) of 40% or more to pursue medical education in disability quota which were earlier not eligible in previous guidelines.

The Health Ministry acknowledged the representation of ‘Doctors with disabilities’ on record which cited instances of individual doctors with more than 80% disability in India (many of these were signatories) who excelled in their disciplines in spite of the disabilities which would otherwise have been not allowed by MCI.

Dr Singh said, “It was a major embarrassment to the AIIMS rehabilitation ‘expert’ who limited the abilities of people with disabilities up to 80% only. This has been amended now to provide equal level field to such candidates to excel in medical profession.

Medical Dialogues has covered the story in detail and can be read at:
https://medicaldialogues.in/health-ministry-to-amend-mci-rules-on-disability-quota-for-mbbs-admissions/

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Very good news: MD Palliative Medicine in Gujarat

We are very happy to hear, though from unofficial sources, that Gujarat Cancer Research Institute (GCRI) in Ahmedabad has been given permission by Medical Council of India to start MD in Palliative Medicine.

This makes GCRI the third institution in the country to offer this course, the first being Tata Memorial, Mumbai, and the second being All India Institute of Medical Sciences (AIIMS), New Delhi.

Hearty Congratulations to Dr Geeta Joshi, Dr Priti Sanghavi and their team for this achievement. Best Wishes!

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Telengana paves the way

Our colleague in Vizag, Dr Vidya Viswanath reports:

“Telangana state has now 8 functional palliative care centres out of 31 planned, one for each district. Each centre consists of 8-10 inpatient / hospice facility in the government hospital and a dedicated home care service. Each of these centres are run by full-time staff consisting of one doctor, 5 nurses, one physio, 2 MPHW, 4 helpers and a driver. All of them have done 6 weeks training in PC and are exclusively meant for PC.

How I wish we were still the united state of Andhra Pradesh !!

But let us hope that this stimulus from Telengana will facilitate and pave the way for well organised palliative care services in Andhra Pradesh too.

Salute to Dr Gayatri and team for making this happen, and setting an example!”

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Dr Y K Hamied among 20 Global Indians

Would the world have been the same today if Dr YK Hamied had not made low-cost HIV medicines available throughout the low-income world?

Would the palliative care scene in India have been the same if he had not made low-cost oral morphine available in the 1990s?

We are so glad that he has been listed among the 20 global Indians!

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Vacancy: Medical Officer at Ahmedabad, Gujarat

Karunalay Cancer Palliative Care Center, Ahmedabad, Gujarat invites applications to the post of Medical Officer (with interest in palliative care).

Eligibility: MBBS. Palliative care training and experience is preferred but not mandatory.

Salary: at par with the hospitals in the city, and as per years of experience post MBBS.

Located in Ahmedabad, Gujarat, for over 6 years, Karunalay Cancer Palliative Care Center is a specialized center giving supportive care of a hospital along with the love of a home. It has outpatient facility as well as 10-bed inpatient services. The center is run by Shyam Oncology Foundation, and provides palliative care free of cost. Visit: www.shyamoncologyfoundation.org

To apply, send detailed CV to: hitesh.dutt1@gmail.com

For further details, contact: 07926754002; 9898831496

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Prepare to read something really ugly!

A few weeks ago, we had shared with you the report from Times of India, describing an ugly face of medicine: Health spending pushed 55 million Indians into poverty in a year

The World Bank reports show that catastrophic health expenditure affected more than 80 million families around the world. Rather obviously, the beneficiary is the healthcare industry.

Now read on; here is something really ugly and frightening:

Harrison’s Principles of Internal Medicine, now in its 20th edition, is a must-read for medical students and young internists. It has been called “the most recognized book in all of medicine.”

According to a recent study, authors for Harrison’s received more than $11 million between 2009 and 2013 from makers of drugs and medical devices — not a penny of which was disclosed to readers. One author, a physician, during that period received nearly $870,000 in funding, including for research, according to ProPublica’s Dollars For Docs database of payments to doctors from drug companies.

Can we help wondering how facts might possibly get distorted? What would medical students all over the world be learning? Scientific facts, or their horrible distortions?

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More about withholding/withdrawing life support:

The Supreme Court of India’s verdict on 09 March 2018 provided legal validity to advance directives, though we did have a few concerns. (Read: A welcome verdict; and a few concerns)

Close upon the heels of that verdict comes a judgment by a five member bench of the Supreme Court of UK which says “Life support can be removed without courts if doctors and families agree“.

This is of course relevant only to the UK; but we could not help observing that it makes a lot of practical sense. This does not rule out the need to go to court in controversial issues; but makes every day practice compassionate and fair.

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“Hippocratic” screened in Gujarat

The documentary film “Hippocratic: 18 Experiments in Gently Shaking the World” was screened in Karamsad and Ahmedabad, Gujarat on July 7 and on July 8, 2018 respectively.

The screening at Pramukhswami Medical College, Karamsad, was followed by an interaction session with Dr M. R. Rajagopal. Dr Bhalendu Vaishnav (HoD, Medicine), Dr Alpa Patel (HoD, Anesthesia & Pain and Palliative Care Services) and Dr Priyanaka Srivastava (Consultant Oncologist) were the other panelists who interacted with the audience. The panel discussion was co-ordinated by Dr Uday Shankar Singh (HoD, Community Medicine). About 140 participants participated in the event, including staff and students of the institute, volunteers, community members and healthcare providers from other institutes.

This event was preceded by two screening sessions for students from medical, nursing and physiotherapy, and were attended by around 150 students.

Our congratulations and gratitude to Dr Dinesh for organizing these events.

In Ahmedabad, the screening was organised on July 8, 2018 by The Gujarat Cancer Society, Gujarat Cancer & Research Institute, GCS Medical College, Hospital & Research Center.

The program was attended by caregivers, patients, medical students and palliative care supporters. There was a question-answer session, following the screening of the film. Eminent oncologists participated in the discussion. It was a great opportunity for palliative care physicians of Gujarat to meet pioneers like Dr M T Bhatia and Dr M R Rajagopal.

Kudos to Dr Geeta Joshi, Dr Priti Sanghavi and team, who worked hard to organize the event and for making it a grand success.

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Even a safety pin can palliate!

Sumitha T. S., Project Executive at Pallium India, writes:

On July 14 and 15, 2018, Vyshnavi (Project Officer, Pallium India) and I visited Dr Zachariah Mar Theophilos Memorial Palliative Care Unit at Thadakam, Coimbatore, Tamil Nadu, to observe the services they provide and to determine how to assist them.

Thadakam is about an hour away from Coimbatore town; a calm space in the middle of the forest and the Sahyadri. On our way to Thadakam, I heard Dr Ani repeatedly warning Shaji, who was driving the car, about elephants which emerge from the forest at night. Our rooms were so cool we did not even need the fan.

Dr Ani is an ENT specialist from Ernakulam and a disciple of Dr Zachariah Mar Theophilos who was quite known for his humanitarian works.  In his fond memory, she initiated Dr Zachariah Mar Theophilos Memorial Palliative Care Unit at Thadakam, about a year ago. Dr Ani regularly travels from Ernakulam to Coimbatore to take care of the patients. The team in Bishop Walsh Memorial Hospital supports her in all possible ways in this endeavor.

The next morning, we started early for home care with Dr Ani, Shaji, a volunteer and a nurse.

The first house we visited was in 2 km radius but it was hard to find even any teashops nearby. There was a woman ironing clothes with traditional iron box outside the house. Seeing us, she called her mother-in-law. Inside the house, we saw her 83 year old father-in-law lying on a bed, unable to move himself but conscious and oriented. After listening to them, we suggested the use of water bed to prevent bed sores. Fortunately, Reena, the volunteer who always accompanied this team could arrange water bed the very next day. It was evident that these parents were worried their children were suffering because of their illness. For some reason, they were not receiving elderly pension and that added to their problems.

After giving him medicines, Dr Ani asked the man if he wanted anything. We all smiled when he replied that he wanted fruit juice.

We moved on to the next house. By this time, Shaji had bought some breakfast which we gave to the woman who was seated on the floor of the house. She was struggling to fix her blouse with a safety pin. We helped her fix her dress with our safety pin, as Dr Ani said, “please give her a pin; that is palliative care now.” This mother in her early 70s has to crawl on the floor to move. She had femur fracture, after a fall. One of her sons gives her food.

Finally, Shaji managed to find a shop from where we had strong tea. Almost all the patients we visited on that day were elderly, some even 100 years old, in similar conditions. Some of them found it difficult to reach their bathrooms which were commonly built outside, at a distance from the house. In addition to medicines, some of them were given rice, pillows, sheets, and a lot of love and time to be listened to.

We saw a polio-afflicted middle aged woman who could walk only with support, who said that she just wanted to sit in her home and does not want to go out to see anything. Another patient was a middle aged man, who cried like anything when he saw us. He sat in a wheelchair and could not move his limbs. His wife and her parents took care of him. Though regular physiotherapy was improving his condition, they were not able to afford it. The team then decided to arrange regular physiotherapy for this patient and some training for his wife to earn a living.

Let me emphasize here that most of these patients are bed-bound and home care is the only solution we can offer them. I realized the importance of home care after visiting these patients who otherwise would have been ignored due to accessibility, affordability and availability.

We owe a lot to Dr Zachariah Mar Theophilos Memorial Palliative Care Unit, Dr Ani, Shaji, Reena and the nurse for their incredible work in helping the patients who would have left this world suffering needlessly, if not for these caring souls.

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From bedside to fruit stand: A cultural exploration at Pallium India

Vijayvardhan Kamalumpundi, a student from University of Iowa who visited India a few months ago, published a narrative about his experience with Pallium India in Trivandrum. Please read…

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Diversification & Partnerships Improve Mental Health Care

By Chitra Venkateswaran, IAHPC newsletter

Dr. Chitra Venkateswaran (4th from left), Clinical Director of Mehac Foundation, with staff.

Learning, as we know, has no end. When we set up the not-for-profit Mehac Foundation nearly a decade ago, our initial focus was to evolve long-term care models for mental health based on the widespread community-oriented palliative care movement in the South Indian State of Kerala. Kerala is known for its impressive social indices and social awareness, so the initiatives have many stakeholders.

We incorporated mental health care pathways in existing palliative care services and sought to build robust clinical services structures. This past year, we recorded significant growth not only in our clinical services but in other, diverse directions, in keeping with the dynamism that stakeholders demanded from us.

Read more….

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image06Palliative Care Information Centre

Contact Pallium India’s Information Centre (9 am to 12 noon) for information related to palliative care and about establishments where such facilities are available in India.

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or E-mail: info@palliumindia.org

For more details, please visit: https://palliumindia.org/info-centre/

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PARTING SHOT

102 not out

No; it is not about cricket.

This Hindi movie is on another game. The game of life. And of death.

This game teaches you about accepting reality. And making life life; not a living death. Played by Amitabh Bachchan as a 102 year old man, and Rishi Kapoor as his 75 year old son.

Whether or not you accept everything the movie tries to convey (you might feel inclined to give the lead character a lecture on unconditional love), it does impart some powerful messages. It makes you wish you could handle life the way the leading character does.

A must-see, if you ask us. Every single minute of it is enjoyable.

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